How do I/Should I get an ASD diagnosis for DS?

[nothinginthefridge]

Been told by CAMHS today that we should treat him as if he has ASD. She found lots of reasons to suspect he has ASD (virtually said he did have ASD).

However, she said it wouldn't change the level of help he gets in school, and it wouldn't change how they would deal with the situation.

Been to my Dr's who has said that he has enough on at the minute (starting secondary in Sept, changing school in Feb, and today been moved to another class), so should sit tight for the minute and let him get through this, which I completely understand.

School have said that it might help him as he gets older to understand 'why he is like he is' and to understand why he feels like he does, and that there are lots of other children with ASD who have learned to deal with challenges. Ds is in S&L resource unit, but there is a closer secondary school to us with ASD resource unit. (worrying made wrong school choice now, although he is happy on the whole at school).

Where do I go from here? Dr was supportive but I think wanted to see if school would progress anything, but I'm not sure that's what school would do? He does have 2 hrs speech and language a week (within school)...would the SaLT refer him? Who do they refer to? He should have a follow up appt shortly with community paediatrician (are they different to developmental paeds?). Do I ask her?

Should I leave it a little while and go back to the Dr's? Should I view it as more urgent? Does DS need this diagnosis, as I seem to be being told he doesn't?

So, so sorry for multiple questions, but I'm a bit a the mo.

Personally, we did need the dx for Dd3.

She has learned to mask her difficulties in school and can get through most days but this is at a huge cost to her emtionally and it is exhausting for her.

Since she had the dx she has had support at school especially for social skills. And i have had support too from the staff and a support group.

We havent told that many people outside school about her dx and i tend to only tell people if there is likely to be a situation she finds difficult.

We are all different but in the end for us as a family, getting the dx has been very positive.

Well if it doesn't change anything they won't mind giving you a dx then surely?

I'd get it for insurance. What if he needs more time in exams, needs protection under the disability discrimination act etc. In the next few years or as an adult?

The older he gets the more fobbed of you will be and currently there is no need to ever disclose such a diagnosis.

Does your camhs in your area have a multi-disiplinary pathway? If so insist you want him diagnosed correctly. Tell them straight its not sufficient that you tell me to treat him as if he has ASD. School will support and back him up if he has a confirmed dx and school can request support of relevant agencies should they ever be needed in teenage years. Mention the extra time in exams etc to give him a fighting chance at school.

Dont take no for an answer :)

No. You need the diagnosis. You need the label, sadly, in order to best access the support. That's what I've found, anyway.

Thanks everyone. I didn't know that you got extra time in exams if you have ASD, as that is a real need for him. He usually gets so overwhelmed by it all that he just puts his head on the table and doesn't do anything.

I've just spoken to paediatricians secretary who says that the paed can point us in the right direction once we have seen her in June.

coff I know very little about the CAMHS in our area - I just have a woman who comes around if there has been a bit of a crisis. She just came today and said carry on as you are....DS behaviour will improve, once he learns how to manage it. {shruggs}

You have been mightily fobbed off.

I am aghast that a GP would say you 'have enough going at the moment' and that an assessment/ diagnosis should be delayed because of a school change in Sept. That is exactly why you need a full assessment of your child's needs - and soon. Change GPs! Honestly. That is shocking. As a medical professional, he/she should know that assessment waiting lists can be very long and that it is best to et the ball rolling a.s.a.p. Tut tut to him/ her.

I also think CAHS are talking out of their arse. A diagnosis will undoubtedly mean that the support your child receives will improve - or should improve, and at least with a diagnosis you have the evidence and arguments there if the school fail to provide adequate support. A diagnosis also means a Statement is much more likely to happen, which will make any support your child receives legally binding and virtually impossible, legally, to withdraw or alter.

You have been misinformed. If were you, I would see a different GP and ask them to refer you to a Paediatrician. Don't take no for an answer.

Sorry, just read post above and realised you are going to see a Paed. Brilliant.

Thanks lovelylovelywine....it is isn't it, although I managed to spot a typo before I posted...lovelylovelywind

Phoned the NAS helpline today, only managed to speak to an operator, but she said "the correct diagnosis means DS gets the correct help". I thought that said it all really.

DS does have a statement already, which is why I think I am being fobbed off tbh.

If he has a statement, he can have 25% extra time in his SATs. (Except SATSs mental maths) The school don't even need to apply for this, it's allowed automatically. Make sure they know, if you feel it would benefit him. It can be a double edged sword, getting good, or better Y6 SATs than otherwise. It may mean he's put into sets in secondary that are too challenging, but it may also mean that he can show his ability better when a SATs style test might not suit him and actually get put into the correct set. (It certainly benefits the school, so their opinion may need to be taken with a pinch of salt.)

I think the extra time continues for his GCSEs. You may need to check this. And that would truly be beneficial.

I would always prefer to have the right DX under my belt as something to wave if necessary.

Thanks ellenjane he is in secondary already so I will check about the GCSE's.

nothinginthefridge,

I would seek a dx as it can open doors that will otherwise remain closed.

CAMHS are certainly talking out of their behinds.

Oops, sorry, thought he was starting secondary this Sept, not last Sept. My mistake. He's in the same year as my DS2, then. (Who has an ASD DX)

No Ellen, It's my OP, just read it again and it does look like he is starting in September. Sorry!